Forum Replies Created

Viewing 15 posts - 16 through 30 (of 186 total)
  • Author
  • in reply to: How Were You Diagnosed? #82056

    I’m a similar case as LisaS’s. Dark urine, every other bowel movement was light, and man was I itching (only had a high of 3.5 on bilirubin though). Bloodwork Thursday, Friday Dr. called and said you need to get in to do more bloodwork, did it, but never got the results. Sunday at 2am checked in to hospital on doctor’s orders (he knew something was up, still no confirmation) and they did a CT and Ultrasound on Sunday but saw nothing. Monday afternoon, ERCP and a stent and voila! no symptoms any more. However, there was a 0.5cm x 0.5cm x 0.75cm mass on my bile duct. They pulled samples, but they came back ‘atypical suspicious fibrous cells’. I was on a plane to NY on Labor day of ’11, 4 days after the pathology came back. We originally had the biopsies going to Harvard but had them redirected to Sloan Kettering. Met with Dr. Weiss and Dr. Jarnagin at Sloan Kettering, both said even if biopsies came back negative, they wouldn’t believe them. Wasn’t officially diagnosed until 5 days after resection.

    And I didn’t have a lick of pain either, probably because of the small size of the tumor. At the end, besides the itching, dark urine, and stool issues, everything I ate would cause me to be nauseous, probably because of the elevated bilirubin levels. I’m officially 2 years and 8 months clean. Posting on my recent ‘astimosis due to scar tissue’ travails in another post momentarily…

    in reply to: good and bad (mostly good) #79667

    Well, procedure did OK, but I blew 4 Fevers over 5 days just a shakin’ and a bakin’… no fun. On 2/24 they exchanged the 10 French drain to a 12 French and plugged it the next day to drain internally. I was discharged 2/26 and flew home 2/28. 3/1 went to Sarasota Memorial with a fever. IV antibiotics and believe it or not they let me go home… hour later and one ambulance ride, I checked back in with a high fever. IV antibiotics, blood cultures, bile cultures, haven’t had a fever since late Saturday. Monday they replaced my drain and did 1of 3 angioplasty procedures. Put in a 14 French tube, a bit larger. Haven’t had any leaking since Monday (other drain was leaking like a sieve) and may get out of here tomorrow… definitely sick of hospitals… been in one 14 of the past 16 days… but hey, beats the alternative, doesn’t it?? Negative biopsy is the best result, I can deal with the scar tissue…

    in reply to: good and bad (mostly good) #79660

    Procedure done. A little sore at the entry point where it goes through the abs. I’m sure it will be more sore as the night goes on. There’s a drain bag attached for now, eventually they will cap it and make everything drain to inside. I think in 2-3 days I go back under for the angioplasty part, then I can go home for a few weeks. All good so far! And, I got to eat!!

    in reply to: good and bad (mostly good) #79656

    Well, I’m in NY, it was 20 yesterday, 32 today, and I’m supposed to be getting this procedure done in a half hour or so but no one has come to grab me. In Sloan Kettering in NY room 1631B if anyone is in the neighborhood!! Will post some more when I get out!

    in reply to: good and bad (mostly good) #79651

    Yes, the bile duct is narrow… but not mine since they used my small intestine to make a new one!! I think the s=arring and narrowing is at the connection point of the new bile duct to the liver so that is where they will ‘balloon’ things…

    in reply to: New to this site #79624

    Dr. Jarnagin did my resection in 2011, he is good, all business, but good. great team around him as well, Kathy is also great. let me know if you have any questions. i have to go to Sloan this Monday and will be an inpatient for 3-4 days. if you are there, stop by to say hi!!

    in reply to: good and bad (mostly good) #79648

    it is sacrelige to call a beignet a donut, nay, heresey!! but yes, we ate them… and ate them… and ate them… and then ate king cake…. for breakfast, lunchndessert, and late nite snacks… we ate…..

    in reply to: Just diagnosed this month #78172

    Best of luck, if you are on schedule, Wednesday is the day for you… It’s funny, seems all of the surgeon’s do these on Wednesday. Mine was 9/14/11 on a Wednesday. It does sound like you have a great prognosis and we’re all praying that there isn’t any lymph node involvement. As Lisa mentioned, feel free to reach out to all of us with any questions that you may have and again, best of luck!

    in reply to: New Diagnosed #77933

    I had clean resections and a very small tumor (0.75cm x 0.75cm x 0.5cm) in the bile duct only but had 3/4 of the liver removed as well as the bile duct and gall bladder. I was in the same boat as you, clean margins, but what do you do regarding chemo? I ended up doing both Chemo and Radiation. Chemo was a combo of Gemzar and Cisplatin, 6 cycles (2 weeks on, one week off per cycle) and Radiation was 5 days a week, 5 weeks total. I finished Radiation in June of 2012 and have had 3 clean scans since. Hope this helps…

    in reply to: Brother diagnosed 2 months ago #75896

    So sorry to read this thread and see how fast things went. My most sincere condolences on your loss.

    in reply to: New to the Group #76115

    Hey Matt, like everyone said, sorry you had to find this site. I’m 42, was diagnosed after the resection surgery officially, but am 2 years cancer free as of 9/14/13. This web site is great and very informative. All of the moderators have a ton of insight and if you have a question, just post it and you’ll get a helpful response.

    Best of luck with your scans and in getting a game plan together. The game plan is probably the most important thing, knowing that you’re doing something instead of just the waiting. Keep us updated!

    in reply to: Survival…Please tell us your latest milestone #64664

    2 year scan: “Stable Examination. findings are not suspicious for tumor recurrence or metastatic disease.” Yeah baby!!! Will post in Good News also with more details…

    in reply to: All is good! #75242

    Fantastic news!! Great to hear!

    in reply to: Update on Ben #53510

    Fantastic news for sure!

    Haven’t been on in a while, and what a great way to touch base seeing this post!! Way to go Tiffany! All of our prayers are headed your way for a fast recovery!

Viewing 15 posts - 16 through 30 (of 186 total)